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Tuberous sclerosis complex: Concerns and needs of patients and parents from the transitional period to adulthood

Pauline Both1, Lyenne Ten Holt2, Sabine Mous2

  • 1ENCORE Expertise Center for Neurodevelopmental Disorders, Erasmus Medical Center, Rotterdam, The Netherlands; Intellectual Disability Medicine, Department of General Practice, Erasmus Medical Center, Rotterdam, The Netherlands.

Epilepsy & Behavior : E&B
|April 10, 2018
PubMed

Insights

Young adults with tuberous sclerosis complex (TSC) need better adult care transition. Patient-driven insights highlight needs for multidisciplinary support, addressing mental health, and parental stress during this challenging period.

Area of Science:

  • Rare disease management
  • Adolescent and young adult health
  • Healthcare transition

Background:

  • Transitioning young adults with rare chronic disorders like tuberous sclerosis complex (TSC) to adult care is challenging.
  • Adult healthcare systems often lack family-centered, multidisciplinary expertise for TSC, increasing patient risks.
  • Patient-driven data is crucial for optimizing support for this vulnerable population.

Purpose of the Study:

  • To explore the medical, psychological, and socioeconomic concerns and care needs of young adult TSC patients.
  • To gather patient perspectives to inform improved healthcare transition strategies.

Main Methods:

  • Qualitative study utilizing semistructured interviews.
  • 16 young adult patients (17-30 years) and 12 parents participated.
  • Concerns and needs were analyzed using the International Classification of Functioning, Disability, and Health (ICF).

Main Results:

  • Key concerns include mental/physical health, participation, self-management, family planning, and medication side effects.
  • Patients require accessible, informed, multidisciplinary care focused on the whole person and family.
  • Parents reported significant stress levels.

Conclusions:

  • Patient-driven information guides recommendations for improved TSC care transition.
  • Beyond seizures, tumors, and TAND, focus on transition, participation, and environmental factors is needed.
  • Adult care must provide expert, multidisciplinary support for TSC patients and address parental stress.
Abstract

Keywords:
AdultsICF classificationQualitative researchTSC-associated neuropsychiatric disordersTransitionTuberous sclerosis complex

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